posted
After months of odd symptoms and having many tests run i went to an LLMD who said based off of symptoms he is highly suspect of lyme. I never had a rash or recall a bite though, and this all started after my miscarriage. A constant toxic feeling in my head, feeling off all the time, and indoor light sensitivity. I have lots of other symptoms also but those are constant and the worst.
My LLMD gave me a supplement list, and recommend i go gluten free. He wants me to do these supplements for a month and then go back and start antibiotics. He then wants to test after a month with igenex as he thinks we may have more of a chance of getting a positive result.
I have a list of supplements to take and when i take them i feel worse. I am not sure which one/ones are making me feel worse, but i feel even more toxic when taking them. They include: resveratrol, coq10, fish oil, vit d, daily vitamin, magnesium malate, nattokinase, vit c, NAC, acetyl-L-carnitine, and alpha lipoic acid.
I also have a MTHFR mutation. Results read: This patient's sample was analyzed for the MTHFR mutations C677T and A1298C. Two copies of the A1298C mutation were identified. Results for the C677T mutation were negative.Elevated homocysteine levels have not been reported when two copies of the A1298C mutation have been found.
Other results have found me to have Low ATP levels, reactivated Epstein Barr, CD57 of 63, Recent labs came back with high reverse t3 serum (28.6), extremely high dhea-sulfate (578.8), high cortisol (22.4), high M Pneumoniae Igg Abs (232), low Alkaline Phosphatase, S, high A/G ratio, and low creatinine serum.
I know some of this will sound foreign as a lot of it does to me, but can someone explain this to me? Is it possible for other things to cause such bad health issues and results other than lyme? I feel like i am going to be stuck with this for the rest of my life constantly feeling toxic.
I also have really bad pain and odd sensations in my calf muscles, legs, hands, and where my feet meets my leg. I also have pulsating sensations in these areas. I am only in my 20's, and i want to move forward but don't know how to. I am scared to go on antibiotics and waste more money on all these supplements only to not really have lyme, but how can i know without trying and seeing if it could be? I just feel lost.
Posts: 17 | From Texas | Registered: Sep 2014
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posted
I would first take a step back and begin with one supplement at a time. You are taking a TON of stuff and now you have no idea which ones are making you feel worse.
Natto is very good but could be making you "herx" to some extent .. and several others could be doing the same.
Those with MTHFR are known to react negatively to many supplements.
Be sure to do a lot of reading HERE and learn all you can so that you can help your doctor manage your care.
posted
Thank you for the info. I am just very concerned abx will cause more issues with my body if i don't have lyme. Can lyme make you feel constantly toxic in your head?
Posts: 17 | From Texas | Registered: Sep 2014
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posted
Sure, it would make you feel worse if you have it. When you take antibiotics it kills off the spirochetes and they throw off toxins. It's quite the picnic.
First thing is to get the test and go from there. Taking one month of abx will not kill you and it might help the test be more valid.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
We all felt lost when we got the diagnosis. You are not alone here. We've all been there. At least you found Lymenet. You're on the right path. :)
Most people never got the rash or recall being bit. You have a low cd57 and myco, toxic feeling in your head and light sensitivity (all common with lyme) so it sounds like you have it.
IMO, no doc in texas is ever going to suggest you have lyme unless he or she is certain you have it. The correct diagnosis for lyme is a clinical one (symptoms). If (s)he thinks you have it, you have it (clinical diagnosis rules). The blood test only confirms it, and even then sometimes the test can be wrong, so people re test later after starting abx.
The fact is if you feel like crap and no one else is giving you answers, believe your lyme doc. The lyme docs are light years ahead of any other doc out there.
Lymetoo is right--to narrow down what is making you feel bad, take them one at a time and keep a journal. Also, two mthfr genes make it more difficult to detox. I suggest coffee enemas. Nothing else has worked better for me.
As far as abx go, it's a big decision. My advice is to go on probiotics now before you start abx if you choose that path. You should know there are other paths to choose from though: herbs (Buhner, Cowden, Byron White) rife, PEMF, and several other alternative protocols to view here on Lymenet.
There is no one thing that works for everyone as we are all different (different genes), so we all try something, and if works, great. If not, we try something else. Everything I've tried has helped me to some degree, so unless I tried them, I never would have known.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
I would see what the IGENEX test says. I should be able to tell you if you have been exposed. If you have been exposed and not treated, then you will have to discuss treatment options for the infection with your llmd.
I think your doctor is wise to get you on supplements prior to any curative therapy.
I had bizarre symptoms for years until I was diagnosed.
Best of luck and this group will help you when you have questions and doubts.
You should not feel terrible for no reason. There is always a cause ......
Blessings
Posts: 172 | From ohio | Registered: Feb 2010
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posted
I understand your fear but I would be more fearful of untreated Lyme then of taking abx,s. If it turns out you do have Lyme there are many things you can do to offset and minimize any harmful effects of abx.,s.
Posts: 151 | From North East | Registered: May 2011
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posted
Thank you all for the replies. A doctor previous to my LLMD ran a Lyme Western Blot Serum through LabCorp which was negative. I have also had Lyme A/B Wester Blot Reflux run which was negative, Bartonella antibody panel negative, Rocky Mountain Spotted Fever negative, Q Fever Antibodies negative, and Ehrlichia negative. Is it normal for all these to show negative?
Posts: 17 | From Texas | Registered: Sep 2014
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Sounds like you are on the right path with your LLMD.
Can you keep a diary of your symptoms, and the exact day and time you take your supps?
Not sure when you see your LLMD next, but a rule of thumb I like is the 2/4 rule.
Only 2 new supplements for 4 days. Depending on how I feel, I will add a new supplement(or two) on day 5.
Some supplements make me feel awful within an hour. Those go on my **** list.
Sometimes, they take 4 days to a week to make me feel lousy. But a detailed diary will help you to spot patterns with certain supplements.
Yes, it is normal for all those tests to be negative. ELISAs are notoroius for high false negative rates.
Also, they depend on the strength of your immune system.
Lyme infections disable the immune system, making an immune response to the tests poor.
A month challenge of antibiotics may make some negative tests go to positive, as the abx kills the bacteria, the immune system catches a break, and also recognizes the dead bacteria as a bad bacteria and responds as such on tests.
The suggestion from another poster to start probiotics is a good one. So is your docs suggestion to eliminate gluten.
Some folks are sensitive to abx. Some are not.
But whatever method is used (and most docs respect and work with patients regardless of which method used) you MUST treat lyme.
It CANNOT be left untreated. CANNOT. It will slowly progress into neurolyme. In really bad situations it mimics MS and ALS.
So just take a deep breath, and trust in your doc. LL's are a breath of fresh air, and take patient care seriously and sincerely.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I just wanted to mention that lyme and co are NOTORIOUS for destroying the hypothalmus, adrenal system and pituitary gland.
It has destroyed mine. Got the results back last week and they are awful!
Your hormone results suggest it is already wreaking havoc on your HPA axis. And I am sorry to hear about your miscarriage. (unfortunately also a side effect from lyme).
The great thing about LL's, is that they will adress and treat the hormone dysfunction also. Which will help you to feel better.
But your hormones being so out of whack are also a clue that leans towards a long time lyme infection.
I just wanted to say I enjoy reading your posts, and your questions and points made are really good, and I lookforward to chatting with you more while we go on this darn lyme journey.
Ticks suck.
Greta
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
This is what i am so puzzled about. If it isn't lyme i don't know what else can wreck so much havoc on the body. Some seemed to think i may have a candida issue but i have never heard of candida causing muscle pains and stuff, and a lot of my other symptoms.
At the same time, some people with lyme said it is odd that a lot of my symptoms are constant and never go away, seems most of their symptoms would come and go. This is one part of it i don't understand myself.
Posts: 17 | From Texas | Registered: Sep 2014
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- "Constant and never go away" (end quote) -- do not think that could not be true with lyme symptoms.
Those who say not - well, it's just not been THEIR experience but it has been that of many others.
But what you describe can certainly be due to lyme, especially if untreated. Lyme symptoms are not always come and go (oh, many do often migrate or zoom in and out, here & there, at their whim).
However, many symptoms can sure be solid for a long, long time, though. Some symptoms are an indication of damage.
Now, there can be other factors, too, of course. But never underestimate lyme. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- MTHFR mutations can also cause constant symptoms -- and MTHFR is often a result of lyme, so that is to consider so you don't just stop at MTHFR but figure out why -- it may be genetic or acquired by infection stress (or both).
Mycoplasma pneumonia was listed, I think, in your notes. That can cause constant symptoms. Most LLMDs are very familiar with this as it can be a frequent coinfection of lyme, too.
Institute for Molecular Medicine - Garth Nicolson, PhD
He is the premier researcher in the area of chronic stealth mycoplasma infections -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Gluten issues can also cause such issues and a constant state, yet, again - can be genetic celiac &/or acquired gluten sensitivities -
& certain infections can trigger the genes to "turn on" so there can be a combination going on, too).
Good that your LLMD suggests going gluten free to see if that can help. If gluten is causing you symptoms (and it can cause ALL that you describe, although the light sensitivity is very "lyme" suspect)
it could take a couple months being totally GF to see lifting of symptoms - but even a couple weeks should help to some degree. See the HIDDEN SOURCES OF GLUTEN here:
Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all);
GMO foods that destroy the GI Tract; Gluten; Dairy. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- One more major aspect as to "what else?" Whether "alone" or as a result of other things. Lyme can cause magnesium deficiency but it can also be rather common in the typical diet.
Magnesium deficiency can cause many of the symptoms you describe -- and light sensitivity can be a clue that magnesium may be very low.
I see you doctor suggest magnesium malate. Good choice. Be sure to take it 3-4 times a day. More detail here:
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.
Negative tests are not all one might think. CDC criteria discussed here and
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. -
[ 12-05-2014, 11:29 PM: Message edited by: faithful777 ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- What's the plan regarding the mycoplasma p.?
That, alone, can also explain a whole lot. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
The results i listed in the original post came back recently. I see my LLMD again in 3 weeks so i think he will discuss them all then. Do you know what the treatment is for hormonal issues and all the other things i have listed?
Posts: 17 | From Texas | Registered: Sep 2014
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posted
My labcorp test was CDC negative, showing only two indeterminate bands. 1 month of antibiotics and I got tested through igenex, I now have three specific bands that are positive
1 month of antibiotics could help your LLMD figure out what approach you need. I did not respond to oral meds, but that was just me.
You should also get tested for babesia. I don't know the risk for Texas, but testing for b.microti and b.duncanni (WA1) is important.
I was also tested for anaplasmosis, tularemia, cosackie virus.
I also have reactivated Epstein bar. If your immune system is compromised, a lot of latent infections resurface. I've gotten shingles, new allergies, walking pneumonia all reactivated.
-------------------- Sick since 2000 Bulls eye 2005 Dx Babesia, Lyme 2014 Posts: 247 | From New Hampshire | Registered: Aug 2014
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posted
It almost seems impossible to get remission from this. I don't read many lyme success stories.
Posts: 17 | From Texas | Registered: Sep 2014
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The lack of access to proper treatment has derailed many, to be certain. Keep that in mind, too. Many never can get the treatment they need and, so, keep trying all they can on their own, with whatever limited resources will provide.
And that's why it's so very important to get to the very best expert you can to begin with (even if coming in later than what might have been ideal).
There have been many who have successfully reached remission. It can be a long, rough & tumbled journey, however, to be clear.
Still, it is important to face whatever the facts are with whatever we can to figure out the best way forward. Every person's experience is a bit different; some folks' experiences are very much different.
Remember, too, that it's never just lyme. With lyme usually come parasites and various other kinds of tick borne infections. A good LL doctor will cover all the bases, hopefully.
We all just try to learn what we need to know, find the best ILADS educated (and beyond) LLMD or LL ND to guide and do the best we can in this seeming all-encompassing journey.
This is certainly something that alters all aspects of one's life but many of those aspects are altered for the better.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
quote:Originally posted by happyinlove: It almost seems impossible to get remission from this. I don't read many lyme success stories.
- I've been Lyme free for 10 years now. You can do it!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
happyinlove, sorry you have to go through this at such a young age. One of the biggest problems with Lyme disease is that our testing is so innacurate.
Among the horrible damage this disease does - is that it causes many of us to stop making antibodies for it - and as a result we do not test positive, yet are still very sick.
I have never tested positive by Western Blot by CDC standards, yet borellia DNA was found in my blood through a PCR test. I also have unexplainable, odd symptoms and have had numerous scans, MRI's, blood tests.
I have lost all hearing in one ear and have cranial and peripheral neuropathy. I have seen so many ENT's, neurologists and oral surgeons it is ridiculous. Before this hit me in my 50's, I was very healthy and active. I didn't even know what antibiotics were.
I do know people who tested negative for years and at various points in their treatment, they did test positive after starting to get well. Unfortunately, we all respond differently to various forms of treatment. That is because the damage the disease does is complex and it attacks us all in different ways.
I know that Mycoplasma can wreak havoc and that might be something alone that you want to pursue since you do test positive for it. There is a very good article on it below.
It is very disillusioning and unfathomable to learn that our medical establishment knows so little about this frightening and complex disease. Also a disgrace! Good luck to you! Posts: 2386 | From New England | Registered: Aug 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Indeed, that article above that dbpei posted is by the top researcher in the area of mycoplasmas, Garth Nicolson, PhD. His work is absolutely excellent.
Many LLMD are very familiar with him and his work. He has presented at various ILADS conferences of the years, too. His main site with many reference links for you to explore:
Institute for Molecular Medicine - Garth Nicolson, PhD
He is the premier researcher in the area of chronic stealth mycoplasma infections -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
You can turn it around, with testing for your physiological specifics and boosting of your systems. Treatment falls in three categories - kill/deter the organisms, detox, and fortify the body.
I went 25 years undiagnosed. When I found out, I started treating with oral clindamycin, as that is one of the few antibiotics I can tolerate, and it happened to work for my Lyme strain.
We did bloodtesting on me, and my abnormal prolactin count of 220 from way back - that's a pituitary hormone that's supposed to be around a 20-50 count - kept dropping - to 150, then to in the low 100s.
When clindamycin didn't work anymore after 5 years, I then started taking bulk turmeric from the healthfood store that I put in empty capsules, kept bloodtesting, and my prolactin has dropped to 49.
I tell you the story because it is a turn-around brain story. Treatments can treat brain inflammation, etc. The trick will be to find the treatments that work for you, as we're all different.
I like natural anti-inflams, like turmeric, mangosteen juice, noni juice, grapeseed extract, there's also bromelain, boswellia, papain and more.
One of the areas that should have been checked or should be checked is your T3 blood level. If low, it needs boosting, as thyroid drives your metabolism. I'm feeling much better on Armour thyroid now. Another good one is Naturethroid.
My doc in San Francisco knows how to read the genetic methylation results and which systems to boost. Ideally, that's what you'd want, is a doctor knowledgeable in how to respond to the genetic detox report.
When you try supplements, I suggest checking one at a time to see what the impact is from it.
It's really called Go to Lyme School to learn about how to turn our bodies around. You can also use the Search function at the top of the page to type in words or phrases and archived threads will come up that you can read through.
Posts: 13116 | From San Francisco | Registered: May 2006
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
So sorry you are dealing with all this at such a young age. I agree with Robin that your T3 needs to be evaluated further. You should check out this site http://www.stopthethyroidmadness.com/
Thyroid issues can cause a lot of symptoms, many mimic lyme as well. A lot of doctors do not know the proper tests to run or how to interpret them. I was treated for years for thyroid issues with levothyroxine but the proper testing was never done. It was not until I switched doctors that I found out I had hashimotos, an autoimmune disease of the thyroid. I was put on Armour thyroid instead and feel much better.
It is amazing too how much your gut has to do with how you feel. I recently completed a course of Rifaximin for small intestinal bacterial overgrowth and was amazed to find my horrible spinal joint pain disappeared.
There is a lot to sort through and it can seem overwhelming. It is important to have an LLMD that looks beyond lyme as well. My first one did not and I spent a year on antibiotics until I left. In the long run I feel it did more harm than good.
Educate yourself as much as possible so you can be proactive in your care.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
There are a few things on your supplement list that I personally would not take. Just my personal opinion.
The particular supplements I would have concerns about are:
- Vit D (because it can feed yeast) - Vit C (because pill forms are often GMO corn and it's not the same as Vit C in food ... and b/c your body will excrete any excess anyway; there are many good food sources of Vit C, such as red bell pepper; - Multivitamin (because I'm not a fan of synthetic vitamins, and because the body is WISELY designed for micro doses of nutrients in combinations, the way they are present in food; too much of any one relative to others can overfeed microbes that like that particular substance, and potentially contribute to flora imbalances ... or can actually deplete some of the others). - Fish oil; I feel that eating fish is a better source. Pill forms seem to me too vulnerable to contaminants.
My other consideration is that taking a large number of supplements adds burden to the liver, burden to the wallet, the risk of interactions with medications, and they also take extra work... all of which can be hard on a person who is ill.
I believe if you buy healthy fresh foods at the farmer's markets and do most of your own cooking, that goes a long way towards getting the right nutrients AND enzymes/flora (which are important too), and helps one avoid all the additives etc. that are put in store-bought food to extend shelf-life.
Not to say there isn't a place for supplements, but too many can be harmful.
These are just my personal preferences though. Discuss w/ your doc if you have any concerns about what he/she is prescribing. (Don't make any changes based on the above please ... I am not a healthcare professional and your doc may have reasons I don't know about for what is being prescribed).
-------------------- Please consult your physician before making any changes to your diet, medications, or supplements. I am not a healthcare professional and nothing I write should be construed as medical advice. Posts: 166 | From USA | Registered: Dec 2014
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posted
Thank you for all the feedback. I just now checked back and saw many more replies.
What i am concerned about is all the viruses etc that go along with lyme. I know my lyme doctor has not checked for many things i hear being a problem with lyme. I have only seen him once, so maybe he will test at another time, but i feel like a lot of the reason people can't heal is because not all things are addressed and until they are the person can't get better.
For example, my LLMD has not checked for heavy metals. Is this something that should be checked? I have also heard of many viruses that my doc has not checked for at all.
I go back the end of December so maybe i will find out more.
Posts: 17 | From Texas | Registered: Sep 2014
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Yes, happy... so many different avenues to pursue. The key is figuring out what to go after first. As you start to strip away some of the culprits, others problems sometimes show up. A good book to read is WHY CAN'T I GET BETTER by Dr. H, MD.
He describes Lyme Disease as a multiple systemic infectious disease syndrome (MSIDS)that attacks many different functions of our bodies and as we go after each, we begin to regain our health. It is very complex and each case is different. So sad that our mainstream medical community is not being properly educated about this
[ 12-16-2014, 02:37 PM: Message edited by: faithful777 ]
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Being homozygous for the 1298 MTHFR means you will likely accumulate heavy metals. For that reason it is important to evaluate for the presence of dental amalgams, which constantly outgas a mixture of metals. It will also cause some abnormality in your vitamin D metabolism, so it is important to maintain supplementation of that. The high reverse T3 is a serious issue, as it means your T4 is being hijacked, and not converting to active T3. That alone can result in a plethora of symptoms. Take your body temperature with a reliable thermometer 2 or 3 times daily and record the results, If you are often at 98.6, then the rT3 is a red herring.
Posts: 60 | From Maine | Registered: Jan 2012
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