posted
Do you think it'd be more likely to have lyme than fibro or chronic fatigue? I'm always so tired. I hope i wouldn't have that because there isn't really a cure..
I've been taking things like chorella, ashgwanda, adrenal support, vitamins, d-ribose, coq-10, l-carnitine and i feel like it isn't helping too much. I also am now on celexa for a month.. And take stuff for stomach candida and an acid reducer.
I'm also worried if what if it's a heart thing, or that i'm having inadquate blood flow to the brain? Ekg normal. I've had an mri WITHOUT contrast which i wanted to maybe show blood flow...
The doctor also only checked my tsh which was 2.22 and .7 weeks later, but no t3 etc. i'm hoping that rules out thyroid problems for the most part.
I'm also worried if it could be a candida problem, or related to gluten but i also doubt that. Doc didn't say i needed a celiac test because i am not anemic, etc.
If i did have lyme and not some depression/anxiety issue, and an igenex lab showed no bands is it still possible and worth looking into?
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I don't know where to start.
* Is lyme common? that does not matter. What matter is if you have it.
[However, it is far more common than we have been lead to believe and far, FAR more common than most doctors even have a clue about. So many chronic illness and neurological diagnoses and also psychological conditions can be caused by undiagnosed / untreated lyme.]
I see that you have posted other questions and received many excellent replies, with some links explaining more about the testing and that the ELISA you had done was worthless.
You ask now:
* could this be fibromyalgia or CFS? Well, so often FM IS lyme and CFS IS lyme (as well as other coinfections being involved).
Certain other things could be at the bottom of this but you should be ASSESSED by a LLMD for lyme, other tick-borne infections.
Lyme should be considered . . . A LLMD is best to do that . . . and you may have it ruled out, still, many LLMD also know about other possible chronic infections that can bring about CFS. CFS / FM have causes. Find the doctors who understand that because most do not.
Either this or another post of yours says that you
* "are waiting for your doctor to tell if they can run a Western Blot" (end paraphrase)
Well, it won't likely happen with a negative ELISA. And if they were to do that, it would not test all the bands, only Igenex will test all the bands. Still, get informed about the tests and maybe if they were to run a WB from a different lab, some detail might be of help.
But, bottom line, your regular doctor, or anyone along the way from there to the lab and the lab, itself, can really mess up even a Western Blot. Most labs do not do it right.
* You say "Doc didn't say i needed a celiac test because i am not anemic, etc. " end quote.
that is utterly ridiculous. That doctor knows nothing about celiac. Run. Find a different doctor because if a doctor is that ignorant about even celiac, they are likely ignorant in other matters -- and that's not even considering lyme.
In the meantime, do learn more about celiac from the real experts in that but know that lyme can trigger celiac and that, celiac or not, most with lyme do so much better off gluten.
You need a LLMD to assess lyme. And, if that is just not possible, read all you can from ILADS educated LL authors / researchers about what you can do in the meantime. Links to follow.
I can't really read your post very well so I'll just leave it at that. My eyes don't do well with paragraphs that are more than about 3 lines. When you post in the future, that spacing like you see here will help others with this issue . . . and then you'll get more answers.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Phoenix Rising ME / CFS Forums is a broader place to ask about your broad symptoms and if you found you were IGenex or otherwise Lyme positive by a reliable test, coming here makes sense along with a few other forums.
This should give you a list of possibilities that you can look into with your doctors. I've been there and its a long haul. I found Lyme near the end but was very positive on almost every test. But there is a long list of other virus's and bacteria that can have similar symptoms as can thyroid/adrenal problems.
Hope that helps with ideas.
Elara, the weird little retrograde moon of Jupiter
Posts: 53 | From Jupiter | Registered: Aug 2013
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here. Most LLMDs will consider a range of options.
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry, I totally missed where you wrote:
"an igenex lab showed no bands "
I'm glad elara mentioned that so I could go back up and see that. Elara posted excellent links for you.
Still, be sure that your blood sample was treated properly at the lab where you had it drawn, that is was processed and shipped exactly to Igenex' specifications. That the blood draw was not on a Friday, etc.
Even with no bands, though, that cannot rule out lyme for certain with symptoms such as you have. Still, absolutely look to the other chronic infections in the CFS researchers' works.
As for worrying about heart, blood flow, etc. I understand and I've been there. For now, connect with support groups to find the best doctors.
I would certainly avoid gluten for at least 6 weeks . . . Dairy, too. And all processed foods and any food additives. It's a good idea to do that, anyway, for a process of elimination.
Chemical exposure? Even with your personal care products, bug sprays, etc. and home furnishings. Any new textiles(the are often loaded with flame retardants, etc.) -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
Also know that some with celiac have no stomach issues. Many can have neurological issues. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Definitely look more closely at gluten intolerance .. very common... and candida/yeast.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You've asked many good questions about "what else could be going on?" The area of food additives and certain kinds of foods are important to consider for reason clear inside of this set.
This is where you can feel some power to do something that will, at least by the time you see doctors more literate in chronic infections -- you'll be able to report any changes you have find by eliminating certain foods.
Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all);
GMO foods that destroy the GI Tract; Gluten; Dairy
See "Hidden Sources of Gluten"
and the NYT series: "Got Milk" (maybe you should not have it, many reader comments say who found many ills relieved by giving up dairy). -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In your "anxiety" thread you write:
"All it said was elisa or westgreen was less than or equal to 20 (2) and western blot (igG, igM) was less than equal to .9."
that does not make sense. that is not how a Western Blot scores.
But in this thread, above, you say that you had an Igenex Western Blot. OR - are you saying "IF"
Did you have both the Igenex IgG and the Igenex IgM? And you had zero bands? Nothing in between?
As I re-read this, the "IF" may be just wondering ahead?
you say: "If i did have lyme and not some depression/anxiety issue, and an igenex lab showed no bands is it still possible and worth looking into? " (end quote) -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Depression / anxiety can have many causes. Lyme, other tick borne infections and the other kinds of chronic viral infections the CFS researchers work with . . . any can affect mood in various ways.
Liver support is also vital to help mood and brain.
I certainly don't want to overwhelm you but all this detail can be a lot to take in. Be sure to breathe. Consider this like a reading guide, your personal research collection.
As for depression / anxiety. When I gave up gluten, I gave up depression. Really.
Giving up food additives allowed me to give up anxiety. Well, that and addressed deficiency in MAGNESIUM.
Still, it's more complex than that still I cannot stress enough how much better you may feel -- at least better able to work through all this -- with a few changes up front.
There is hope, no matter what all is going on (and it likely more than one or two things) . . . there is hope.
As you are 3 hours ahead of me, I see it's close to midnight, so I hope you are asleep and see this tomorrow.
When you feel overwhelmed. allow yourself to put all this aside, though, and enjoy what you can. Music, nature, film, laughs. All this won't be figured out in a day. But you are on the right path by continuing to seek answers. You'll get there. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I see you take d-Ribose. For some, d-Ribose can cause anxiety or make it worse. Sure did for me, because it was too stimulating for my body. Be careful about taking too much in order to get energy.
To help now with anxiety issues & with depression:
Topic: MAGNESIUM - LINKS sets -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
IMO, yes, lyme is really common. Also, IMO, lyme, fibro and CFS are all the same thing = lyme.
Did you ever get a copy of your blood test, or was the no bands at all something your doc told you? Your doc saying no bands at all could just mean what he or she interprets the lyme bands should be.
There is lots of controversy over what bands represent lyme. It's possible he or she may not be aware of what the cutting edge lyme docs know (ILADS docs). IMO, all other docs are clueless.
You absolutely need a copy of that test, no matter what your doc said, or else you're running blindly by a doc who may not know what he or she is doing.
IMO, you have to get a copy of that test, or you're wasting your time guessing.
Also, are you seeing an ILADS LLMD?
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
posted
Ditto to everything above. You need a copy of the test you did do. Also, even with a good lab like IGeneX, test results can com back negative, for 27 reasons! Like the body is too weak to mount an antibody response, or the spirochetes might be hiding in the tissues, etc. That's why we need to see a Lyme-literate doctor for eval.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I don't believe Kaseyyy has had any lyme testing yet. See what she posted on June 30:
"Besides that, I have not made an appt with a lyme doctor but am planning on doing the igenex lab. I am waiting to call back my doctor because apparently she didnt know if they could do it... I was wondering should i save money and do the western blots, or also do the co infections/pcr serum tests too? Co infections usually are present if lyme is too, right?"
So, her question is theoretical at this point--could she still have lyme if her Igenex Western Blot test, once she gets it, show absolutely no positive bands?
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
The only symptom I see on this post is –
quote: I'm always so tired
.
If you have other symptoms you should list them all on one post.
If this is the only symptom you have, it may be related to something other than Lyme and C0-infections.
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
This is what she said in the June 30 post above:
"Is it possible to have lyme even if you don't have swelling of the joints, etc? I'm always really tired, off balance feeling, seemed like i always kinda had a lightheaded feeling but not sure, achy. Idk if it's related but my vision is really staticy. Also.. it's like my chest is constantly tight although this all "could" be anxiety, jaw, stomach problems and throat seems to hurt a lot. I used to think my hearing was off and for a while i felt like i was majorly in a dream and it was scary but i've tried to ignore it."
"I am constantly lightheaded, i feel all off balance, my arms and legs feel very weak, sometimes i can't tell if the right is more. Extreme fatigue. Some joint aches at times it seems, tingling at spots. Eyes feel heavy, tiny muscle twitches, sometimes ears seem clogged? Not sure though. The head feeling is the worst i think. Walking around feels weird to me, dream like a lot. I remember seeing black floaters once or twice, i think. BP okay but it's like at night i feel my heart pouding. Sometimes ringing, vibrating in ear? Throat has hurt on and off in the past few months, slight thrush on back of tongue, doctor said it's fine. Jaw and neck has hurt a while before, and stomach. Felt better at some point seemed less lightheaded, out of it, then one night it seemed to hit and the weakness and off balance feeling seemed to really start, got better after a week, came back worse after drinking, i think.."
"I've been having stomach problems for months, stiff/sore neck and shoulders and jaw, general fatigue. My vitamin d came back low but a month or more ago, i started feeling lightheaded basically constantly and it seems to increase in severity in periods of times.. Just recently I feel more anxious all the time, tighter chest?, hear heartbeat a lot, hearing seems to be off and sometimes things seem loudish, feel out of it and in a dream a lot which upsets me.. Recently the lightheadedness hit even worse, my joints seem to be sore, it felt weird to walk like my body went super heavy and weak including my head so i went to the er. Felt really off balance, lasted almost a week. had pink eye like two months ago, and i remember having a sore throat lasted 3 weeks. When i stand from sitting my feet feel heavy, tingly. The lightheadedness and spaced out feeling scares me the most..and i am always SO tired. I really hope this is not "fibro" or "anxiety". Any suggestions?"
steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Thanks TF - It makes more sence now why Kaseyyy is suspecting Lyme!
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Thanks TF.
It sounds like lyme to me.
Kasey, you would know for sure if your doc actually sent your test to IGenX lab because you would've had to pay out of pocket for it. I think it's $300 or $400 (can't remember).
Any other lab's test has considerable false negative rates. That means you can still have lyme even though the test said you don't, and what the doctor said as well (most doc's don't know enough about this subject, regardless of what they think).
You are on the right path searching for answers, but you just need to push forward and find a real lyme literate MD. Infections disease docs think they are lyme literate but they are not. They are following old guidelines, as are any other doc who is not an ILADS doc.
ILADS is a cutting edge organization (International Lyme and Associated Diseases Society). No one else will do when it comes to lyme.
For a doc, you can go to www.lymediseaseassociation.org and they will email you some names. Also, you can go to "Seeking" here on Lymenet.
Best wishes, and push forward!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
All Kaseyyy has had so far in the way of lyme testing is a negative ELISA from Quest. See this thread:
posted
Wow, thanks for all the support. Sorry for misunderstandings, I meant I told my doctor about igenex and I plan to tale both western blot tests by them. My doctor has the next open appointment in a few weeks from now but I want it done sooner so I might call a lab around here.
It's like i always have some sort of headache for years now so this added on is making me really upset and hopeless. I had an elisa and that is it which was negative. The doctor thought I didn't have celiac because i was telling her i feel a weird head feeling/lightheaded but i am not anemic. I might ask her next time for a few more tests on thyroid/gluten/cortisol, but i read online tests aren't really reliable for that but found one online that checks for gluten intolerances, etc. just not sure if i want to spend all this money. I was wondering if i should see someone for fibro, etc but i am thinking that should wait. Maybe a LLMD appt would be best, it's just finding one and they are a far drive a lot of them..
My doctor is working well with me it seems and agrees to help out with the igenex kit, it's just i wish the appointment was sooner.. Do labs do that kind of stuff no problem? I just feel like i never have any energy it just seems to have gotten worse, maybe worse other times than others. I'm constantly yawning. I am just unsure what specialists to go about seeing right now, ENT for ears maybe, but i don't have vertigo so i doubt that's an issue.
Posts: 315 | From Allentown | Registered: May 2014
| IP: Logged |
posted
If i am trying to save some money, do you guys think just both western blots would be fine instead of doing all the other coinfection testing? My doctor said she has to figure out all the directions for igenex and that, but i want to get this done sooner.
Posts: 315 | From Allentown | Registered: May 2014
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I recommend you hold off on specialists like ENT, etc. until you get your igenex results. You will want to save your money because you will need it for lyme testing and treatment.
I also recommend you use Igenex for coinfection testing. Get a complete coinfection panel (babesiosis, bartonella, ehrlichia, etc.) This will cost at least $650.
This way, if you are positive on any coinfection, you know you also have lyme, even if the lyme test is just one positive band.
The presence of babesiosis, for example, indicates lyme is also present. Babs causes "air hunger" which is what you seem to be experiencing when you talk about chest tightness. It is the feeling of not being able to get enough air.
Lyme also causes sore and stiff neck, muscle twitches, tingling, headaches, joint pains, and many other symptoms you have mentioned. See the list of lyme symptoms on pages 9-10 of Burrascano Guidelines. See link below.
Any person who has numerous symptoms affecting numerous parts of the body (ears, neck, stomach, eyes, brain, etc.) has an illness that is capable of affecting many parts of the body (OR, they are a hypochondriac).
There are not many illnesses that can affect so many parts of the body. There are very, very few illnesses that can do so. Lyme is one of those few illnesses.
So, when you go to a specialist for ears, all he really knows is ears. Same with eyes, etc.
Yes, lyme doctors are few and far between, so it is more effort to go to one. But since all of your symptoms can be explained by lyme disease, it makes sense to go down that road first.
It offers you a complete solution. Seeing specialists will not.
See page 25 of Burrascano Guidelines for a short list of symptoms for each of the coinfections.
Try to figure out if you have symptoms of babesiosis and bartonella. These are the 2 most common coinfections.
Feeling like you are in a dream-like state or spaced out is SO common for lyme patients. It is called derealization or depersonalization. And, this can easily be your most frightening symptom. It is talked about quite a bit on LymeNet. It is from lyme affecting the brain. Generally, the inflammation caused by lyme impedes the flow of blood in the brain causing these types of symptoms.
These can all be reversed with good lyme treatment. So, it is very worth it to pursue treating lyme for all you are worth!
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
If you are trying to save money, you're best bet is to go to a LLMD and get to the root of the problem, rather than trying to self-diagnose, running from doctor to doctor and picking random tests online IMHO.
I wasted a ton of money last summer with my primary care physician sending me from one specialist to another, running tests and CT scans, etc.
My first visit with an LLMD cost about $250 and the Igenix test was about the same. Best money I ever spent!
-------------------- One day closer to being cured..... Posts: 104 | From Wisconsin | Registered: Jan 2014
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
There are not enough LLMDs, so traveling to find one is way more important than not. Eventually people figure this out as they keep deteriorating.
Check this out (video below). These people deteriorated due to the inability of our medical system to recognize as well as properly treat them for chronic lyme.
Keep in mind while watching this that we are all different, and lyme does different things to different people. This is why it is so important you see an ILADS doc. IMO, no one else will do.
You should also get the book: Cure Unknown (Weintraub). It's a great read and might save you a lot of time figuring this all out.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
If you have insurance, a lab like Labcorp or Quest can do the co-infections. Those should be covered.
Medicare pays for Igenex and there are financial help services that are stickied that can help pay for it.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic