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Old 01-25-2012, 11:01 AM   #1
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Question for long term lyme sufferers.

Iíve posted before, but have a different question. Guess this might be directed to long term lyme sufferers. In treatment going on 6 months, 2000mg abx, plenty of supplements and probiotics. 80% better which is a gift from God. However, my LLMD stated early on believed diagnosis of lyme was clinical due to weak test results. The lingering symptoms are inner tremor, no well being, feeling ill. Prior to getting to this point of feeling better than before with all the other 50+ symptoms I started with, the LLMD made few comments which never were expanded on. LLMD states the vertigo inconsistent with lyme (not what Iíve read), inner tremor that lingers could be heavy metal toxicity and allergies (which LLMD stated I just looked allergic). I had testing for food intolerance and been told results show moderate intolerance to dairy, gluten, chicken and I couldnít see what else (btw, the doc does not show you test results and to request copies is not allowed. I understand why though due to negative response if treatment, etc got into wrong hands). However, my question to long time sufferers, has anyone developed these intolerances due to lyme? Funny, prior to lyme infection, I have never had any allergies to anything. I can eat anything, no stomach issues, rashes, etc. So I am perplexed when LLMD tells me to eat gluten and dairy free if I have no GI issues. I normally eat a low fat diet and have a bmi of 22, so my eating habits are not bad.

Also, anyone told to get tested for heavy metal toxicity which can contribute to inner tremor(this runs is $360)? Iím running out of money for treatment (just doctor visits and supplements $1,000 a month) and I want to use my money for the treatment. The doctor gives impression if I donít follow is recommended, abx will stop being ordered. This doc has excellent reputation. Confused 

 
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Old 01-26-2012, 02:39 AM   #2
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Re: Question for long term lyme suffers

Dganz,

I think among LLMDs there are good and probably not so good ones. I would seriously question some of the things this doc has told you, not to mention not letting you see the test results! You paid for them. They belong to you. This sounds very strange to me.

What you describe that you are experiencing is not at all uncommon with Lyme, including vertigo! Lyme affects all systems and abx therapy also takes its toll, especially on the colon, digestive system. Going gluten free is not a bad idea to help support GI health during this time.

You also mentioned inner tremor, also not uncommon with chronic lyme. Instead of testing and testing you could just treat symptoms as they arise; however, I know that may not be possible with your present doc. If you want to follow his directives then I guess you're going to have to have the test he recommends.

If interested, you could also look into the book I mentioned in a previous post. The author cured himself of Lyme and has excellent info. on how to supplement for various ailments as they arise.

Jen

 
Old 01-26-2012, 06:43 AM   #3
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Re: Question for long term lyme suffers

You can't get copies of your test? That is just crazy...never heard of that before. I agree with Jen, you paid for them. Their yours you should be able to get copies. I would demand it!

That is pretty expensive heavy metal testing. I have been tested twice, both times different companies. Think it was under 50.00, you don't need to be tested for every heavy metal under the sun...

If you can't spend the money, then just do chelation to remove heavy metals, just a thought.

Jodie

 
Old 01-26-2012, 11:29 AM   #4
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Re: Question for long term lyme suffers

Have you been tested for coinfections? I recently found out I also have babesia.

 
Old 01-26-2012, 12:45 PM   #5
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Re: Question for long term lyme suffers

Yes I was tested for co-infections, had symptoms of co-infections. But my test always came back as pending for babesia. So for years went untreated cause the test didn't say positive. After eons of years I was re-tested again and after 11 years of treatment I tested positive for babesia and lyme.

There are many strains of babesia, bartonella, lyme ...the labs don't test for all the strains or they just don't show up.

Bartonella was always pending too.

You can not go on test...that's for sure...

Jodie

 
Old 02-14-2012, 01:10 PM   #6
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Re: Question for long term lyme suffers

I appreciate the advice from both Jen and Jojo. I can see ur both long time sufferers of Lyme. I don't mean to give the impression my doc is rogue. She is good and has relieved alot for me. But my primary doc said something that did make sense (even thought they are not LLMD). He said that some docs try to treat every little thing even if there r no symptoms. Like in my case having food intolerances but no symptoms. If I indeed had GI problems one would think the testing would give insight to why there r GI problems. I'm at the point that although she is a good LLMD and I'm at the 6 month abx mark to change courses and try reading up on the salt/c protocol. My LLMD did say that after 6 mons she would have to change things. Think she meant homeopathic. But still not on board with heavy metal testing. I've read that provoked heavy metal gives results because it's provoked. Putting agents in ur body by IV which causes iron to stick to something (can't recall what). My prim said there are other ways to test for heavy metals that don't require putting agents in ur body. I always believe one has to read and listen to other veterans for advice to help in discerning what docs recommend. I suppose if I had unlimited $$ (most people don't) I'd run the whole gammet.

 
Old 02-15-2012, 05:12 AM   #7
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Re: Question for long term lyme suffers

Hi Dganz,

From my own personal experience as well as years listening to, and reading reports from, other lymies, testing with specialists for symptoms that arise from LD is pretty much useless. Almost always they will turn up nothing and are a waste of $ if one has to pay for these tests. The symptoms are real, they arise from the lyme bacterium. But trying to look for a cause of the symptoms by going to GI docs, Cardiologists, and other specialists will (almost always) not turn up anything because they are looking in the wrong place. They're not lyme docs so they can't be blamed if we go to them seeking answers for something they have no knowledge of. They're looking for answers for your symptoms from the knowledge base of their specialty and this is not where the answer lies.

We've all been through this, thinking, as symptoms arise from lyme, that maybe something else is going on with our stomach or heart or nervous system . . . Thus, we seek out those specialists. The best course of action is to stay put hitting the lyme and detoxing. It's really necessary to develop patience and realize that most of us are in this for the long haul. The sooner we accept what we are dealing with, and agree to roll up our sleeves and begin the work, the better we will be able to cope with ongoing developments.

Jen

 
Old 02-15-2012, 06:30 AM   #8
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Re: Question for long term lyme suffers

I have had many a test through all of this mess, as well as other people. Many of them came out negative. No reason why the stomache problems, no reasons for the major on going Migraines, so Mri's were negative. Always a doc saying, well just don't know what is wrong with you.
Lyme and GI problems, heart problems, brain problems, bone problems, ect..they all go hand in hand.

If you do not like the test this LLMD says for you to do for heavy metal testing, then say no thank you. That one sounds way out there. Both of the ones I have done, did not require having toxic stuff put into my body. I had a urine and a hair analises. Way inexpensive. And it is up to you if you even want to have heavy metal testing. But it could compromise you getting better if you have a over load of metals in your body. Have you read up on Arsenic poisoning or Lead poisoning mercury poisoining? Many of us as we walk this world pick up, drink, or eat heavy metals...

When i was going from doctor to doctor, I figured out to not talk to the m.d's that were not Lyme Literate or knew anything about heavy metal testing or looking for co-infections. They phooed everything my Specialist said...Years of treatment, my specialist was right. The g.p's did not want to open their eyes..sides it would be to hard for them to figure it all out.

Just wanted to throw in here....protocols change all the time when it comes to treating Lyme and all this. Beings our bodies are so different from eachother...so maybe your doc just wants to change the combination of the things she has you doing.

Have a great day!

Jodie

Last edited by jojo; 02-15-2012 at 06:38 AM.

 
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